“Is it? I need help. My husband had a stroke 10 years ago and has aphasia. [dificuldade de comunicação e de linguagem]”It’s very difficult to understand. He underwent speech therapy for two years and was discharged. But I can’t understand it, with children it’s even worse,” a desperate woman’s voice could be heard on the other end.
Another woman, aged 40, translated what she heard in the hospital: “You, severe aphasia, speak, never again.” So, despite the difficulties, she went to seek help where hope opened the door for her. After five years, she sought out the Portuguese Institute for Aphasia (IPA) and I asked her why she had sought us out. “Because I want more! I can do it!” she replied.
The API also receives more comments by email: “Apart from themselves and their immediate family, few people know what aphasia is. (…) Even doctors from other specialties do not know how to communicate with people with aphasia, they think they are deaf or ‘crazy’. My husband has had aphasia for six years and it was very difficult to adapt and accept it. I feel that he has become an angrier person knowing all the obstacles that appear in everyday life and especially the barrier that was created when returning to work.”
These and other real stories illustrate a problem faced by many people with aphasia and their families: the lack of ongoing support after the initial rehabilitation phase. Portugal is one of the European countries that invests the most in the rehabilitation of patients after a stroke. However, despite advances in early care, there is still a huge gap in ongoing rehabilitation, especially for those left with aphasia. This is a condition that affects the ability to communicate, with profound long-term impacts on people’s lives and on the community itself. There are an estimated 40,000 Portuguese people with aphasia due to a stroke.
In Portugal, traditional speech therapy intervention in aphasia focuses mainly on the first months after stroke, when spontaneous brain recovery offers a window of opportunity to improve language. However, this approach, although essential, is not sufficient to address the psychosocial consequences of aphasia, such as dysfunctional communication, social isolation, family dysfunction, depression and difficulties in social and professional reintegration.
This is where the Life Participation Approach to Aphasia comes into play. This approach is aligned with the recommendations and evidence published in this field, and goes beyond “deficit-focused” rehabilitation. This approach emphasizes the importance of helping people with aphasia to resume meaningful activities, promote social inclusion, and provide ongoing emotional support in the process of adapting to a life with this reality.
At an international level, experts advocate that all professionals and services, along the care continuum, should integrate this philosophy and adapt their practices, appealing to a biopsychosocial vision of the problem. However, in Portugal, a reduction strategy based on the biomedical model prevails, in which brain damage is the justification for everything. As an IPA trainer, I have noticed that these biopsychosocial approaches are still “foreign” to many rehabilitation professionals. In addition, the lack of access to psychological and neuropsychological support, social assistance and support in the community means that any initial investment does not bear the fruit that we would all like: people reintegrated, active and even contributing to their community. And this has economic consequences for the country.
The foundation of the IPA was a direct response to these gaps. At this institute we believe that life is bigger than aphasia, that is, rather than “reducing” the degree of aphasia, it is essential to help people live with this new reality. We combine individualized support with group activities (in person and online), creating augmentative and alternative communication solutions and the development of skills for greater functionality and autonomy.
We also look at the needs of family members and caregivers. Through campaigns, resource creation, partnerships with healthcare institutions and research projects, we have sought to increase public understanding of aphasia and promote a more inclusive and accessible environment for people with aphasia. However, there is still a long way to go.
It is imperative to look at aphasia as something that is much more than a problem to be treated in hospitals, clinics and rehabilitation centres, and to adopt a broader view, since it is a social problem. Ultimately, these people will only be able to be rehabilitated if there are better responses in the community and more communicative accessibility.
In countries where AVC costs are high, investing in better training of all health professionals on how to communicate with people with aphasia (and other communication disorders) well as in the shift in the rehabilitation paradigm is, without a doubt, the way to follow. Only then will the IPA phone stop ringing.
Paula Valente is a speech therapist and holds a master’s degree in clinical linguistics. She has been working with people with aphasia since 2008. She founded the Instituto Português da Afasia and has since dedicated herself exclusively to the cause as executive director, trainer and social entrepreneur.
Arterial is a section of the Observer dedicated exclusively to topics related to cerebrovascular diseases. It is the result of a partnership with Novartis and has the collaboration of the Association for the Support of Patients with Heart Failure, the Portuguese Cardiology Foundation, Portugal AVC, the Portuguese Stroke Society, the Portuguese Atherosclerosis Society and the Portuguese Cardiology Society. It is completely editorially independent content.
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Source: Observadora
